Flyer describing conferenceEVENTS

OI Conference in Bologna

Would you be interested in attending a conference about patient engagement in OI research in Bologna, Italy? The conference takes place on June 13th 2024. It is organized by the consortium Remedi4All in collaboration with OIFE, As.It.OI (Italian OI-association), ERN BOND (European Reference Network on Rare Bone Diseases) and EURORDIS (Rare Diseases Europe). Tickets are…

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EDITORIALS

When obstacles become opportunities

By Alessandra Tolaccia, OIFE Volunteer I have been suffering from chronic pain for over 15 years now, and every time I have approached a new doctor looking for help, the answer has always been the same: pain in muscles/tendons has nothing to do with OI. But why doesn’t my pain go away with the common treatments…

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ADVOCACY

OIFE AT EFPIA PATIENT THINK TANK

November 22nd we had the great pleasure of being invited as observers to the hybrid meeting of the Patient Think Tank of European Federation of Pharmaceutical Industries and Associations (EFPIA). We learned about the work of other European federations, hurdles and opportunities for how patient organizations can work with industry, medicine shortages and patient engagement…

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ADVOCACY

The voice of children with OI

Interview with Jenny Wang, Shriners Hospitals for Children (SHC) – Canada and Khadidja Chougui, PhD candidate in clinical child and adolescent psychology at Université de Montréal, Canada Jenny Wang: My name is Yi Wen (Jenny) Wang, and I graduated from McGill University with a Bachelor of Science Nursing degree in 2019 and a Master of…

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EDUCATIONAL

OIFE Educational Webinar 2022

The second part of OIFE’s annual meeting on June 4th 2022 was an educational webinar open to anyone. And a diverse group of ca 80 participants including OIFE-people, clinicians, researchers, industry people and other interested individuals came together to hear about news from the international OI-community. News from OIFE, ERN BOND & others The first…

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MEDICAL

OI-registries in the USA

In OIFE Magazine 2-2021 we published an interview with Brendan Lee, M.D. Ph.D., Baylor College of Medicine, Houston, Texas about OI-registries in the USA. In Europe we are developing the EuRR-Bone – which OI-registries do you have in the US? There is a contact registry with ca 2500 individuals signed up, which is sponsored by the…

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MEDICAL

The IMPACT Survey

The IMPACT Survey is a joint initiative between OIFE, OIF & Mereo BioPharma. The survey will be launched in summer 2021 and we will need the help of all our member organizations and the OI-community to spread the word and encourage as many people with OI (and parents) to fill in the survey.  Written by…

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ADVOCACY

OIFE AT PATIENT ENGAGEMENT FORUM

This week representatives from OIFE attended two different online sessions connected to the Patient Engagement Open Forum, which is a series of virtual educational sessions on patient engagement. The Forum is hosted by PARADIGM, PFMD and EUPATI aims to provide a holistic perspective of patient engagement, the landscape and actors, and foster collaboration and co-creation…

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EDUCATIONAL

OIFE at EURORDIS Winter School

EURORDIS launched Winter School with the aim of deepening patient representatives’ understanding of how pre-clinical research translates into real benefits for rare disease patients. The training equips participants with knowledge and skills so they are empowered to effectively participate in discussions with the researchers, policy makers and companies responsible for research or research infrastructures. The 2nd edition…

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